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The Perfect Storm

I received a tweet the other day from a friend, sending me a link to a piece of research information that I was more than happy to read. They have at last debunked one of the so-called “cures” for MS. For me, it was further proof that research papers really shouldn’t be put in the public domain. The article was published in the Lancet and following research paid for by the MS Society in Canada, on CCSVI. If you haven’t heard of it, it was a theory that blocked or narrowed neck veins to the brain might have been the cause. It has led to many people paying for expensive operations to be done, some claiming really good results, but many didn’t. The new research showed up something that had been totally ignored in the original, it’s not just people with MS, who have narrowed veins, and are totally symptom-free, in fact, 50% of those in the three groups they looked at. I fully understand that the publishing of medical research is really meant of the medical profession, but it is no longer staying there.

To me, false hope is worse than no hope at all, and this, is just one of far too many false hopes, that I have heard of in the time I have been diagnosed, and not just false hope for MS, for many, many conditions. In some ways, they are actually worse than the charlatan cures, as these are backed by well-respected organisations, with impeccable pedigrees, not someone with shiny shoes and slicked back hair and a dollar sign over their head. We all need hope, it’s almost a vital ingredient for a good life. I just wish, they wouldn’t publicise anything, that isn’t available today, tried, tested and rubber stamped, as I have spoken to too many people, distressed because they can’t afford the treatment they believe will save their lives. You just have to take a look at any of the funding circle websites, to see thousands of people, trying to raise the cash need for this or that treatment. Many are for well-recognised procedures, the fact they are there, is a different subject, but many are there on a wing and prayer. They would be better off spending what every money they have, just on living a happy life with those they love, for as long as they can.

I know it is up to us, what treatment we put our faith in. I guess it’s slightly different for me, as I have been told there is nothing, not even any of the disease modifying treatments already used for the treatment of MS, that will work for me, due to the form of MS I have. When you have been told something like that, you initially go through the disbelief. Yes, I searched in the hope of finding something somewhere, but when you come up against enough brick walls, you accept. I used to read every new discovery, but every single one I read always had somewhere in it, that it was only suitable for relapse-remitting MS. The odd one includes one of the main progressive forms, but none PRMS. I used to question my Neuro about them, but his answer was always the same, it’s not suitable for you. Now, well now I don’t read them, unless, someone sends them to me, and some do. When I do read them, though, I don’t look for a cure for me, I look for a cure for those to follow me, those who might at this second, be having their first symptoms. It is a fact, that all new therapies and drugs take testing, long drawn out testing. Nothing, even a new compound of aspirin, finds it way onto the market, without years of testing. Years, I don’t have.

There is one piece of information, that I want to hear far more than they have found a cure. I want to hear, that they have found the cause. I hate unsolved mysteries, the play on my mind, as I can’t believe that there is anything that can’t be solved, eventually. Personally, I have always believed that it will not be one thing, not just a virus, or just the locations it appears in, it will be a complex combination, that when the unfortunate person has collected all the pieces, they become ill. If you read from the start of my blog right through to today’s, you will find my opinion of some of those factors that build up to the perfect storm. There is one thing I am convinced of, though, they won’t find the answer until there is a universal questionnaire, that covers everything and anything, that could even have the slightest possibility of being involved. I have taken part in many online research questionnaires, in which there is always one glaring problem. They give multiple choice answers to check off, but in almost all, the answer I want to give just isn’t there. The second I find that, I know the research is flawed, and what I am actually filling in, is someone’s questions that they only want answers to, that prove their own personal theory is right. Once they do have a true questionnaire, it has to be given to everyone who has MS, regardless, of which form, and that the importance of it is truly stressed, so that those who usually wouldn’t take part in such things, will. Then, and only then, along with all the medical test results from their diagnosis, will they have a true picture, of what we the people living with the condition, really feel, think or believe. With conditions that can’t be diagnosed just by looking at the simple things, like blood and DNA alone, they are never going to find the answer. Running tests on a handful of people, have failed and failed again, so why keep repeating the same flawed process? Although, I am against postmortiums for natural deaths, these too, might be needed. I also believe, that it isn’t just MS, that would benefit from this approach. Yes, it’s time-consuming and, therefore, expensive, but if they want to really find the cause, or fully understand anything, they have to have the full data, to start with. Unfortunatly, until there is a way of doing all this for pennies, I believe, the causes will never be found.

The other day, I wrote about my thoughts on changing my pain control meds. Well, I have just spoken to my GP about the tablets I am on, and what I was hoping he would agree to. It appears, that the pain clinic was talking rubbish, I am already way above the upper levels of Gabapentin, so that can’t be increased. What we have discussed and agreed on, is that I come off the Amitryptiline and change over to a newer tablet that should have a better effect. Because I was reluctant to just do a straight swap, as I am aware of the withdrawal effect, I am going to take a staggered combination for one week then drop the Amitryptiline totally. Of course, in the time, it has taken me to speak to him, and write this, I’ve forgotten the name of the new drug, when I know, I will let you know. If at any time, I feel it’s not working for me, or the change over is too dramatic, well I will just go back to the Amitryptiline. If it fails in any way, well the only other option is for me to take an increase in Morphine. He thinks, from what I have told him, that I need to increase my current 70mg twice daily, to 90mg, but we’re not going down that route yet. I told him how many boosters I have been taking and he isn’t at all concerned about it, as he said, “That’s why I give them to you”. I don’t know what it is, but I doubt that I will ever be happy about spending my life on Morphine. I don’t even have a logical reason, that I am so against taking more. I can only assume that there was something I either read or heard, in the past that’s tucked away in my brain, just saying “No, don’t do it”, but I have no other choice.

12 thoughts on “The Perfect Storm”

I don’t have MS (though I was given a presumptive diagnosis after a drug I was taking for fibromyalgia gave me all of its symptoms and had me using a cane), but I am now being tested for ALS as I have its symptoms (and both my mother’s siblings have/had it, including her brother, whose progression was so rapid that the time from from diagnosis to death was less than a year).

Anyhow, every approved or traditional medication for fibromyalgia has produced an unacceptable side effect — either the MS symptoms (as noted above) or Parkinsonism or migraines (which have never gone away even after stopping the meds, so now I’m stuck with migraine treatments, including biweekly vitamin infusions and Botox injections every three months, which are no picnic — and my doctor and I have resigned ourselves to simply treating my pain rather than preventing it.

I am not yet at the morphine stage (though I’ll probably get there at some point), but I recently did increase the strength of my pain medication and add a second muscle relaxer to my regimen. This is something my doctor has been suggesting for almost two years, and I’ve been resisting it, until finally, a couple of months ago, he firmly told me that I’d been stalling long enough. Like you, I don’t know why I was so reluctant to increase the dose, but I was. I know I’ll never be rid of the pain medication, and I also know that over time I will need more to have the same impact (I had been on the previous dose for almost four years, so I think I had done quite well). I think it’s related to my continued reluctance to see myself as a disabled person (I have more things wrong with me than just the fibromyalgia) — I want so much to be someone who just has a couple of medical issues; the truth is that every morning I wake up in a body that doesn’t work the way it’s supposed to for reasons no one understands and in a way no one knows how to fix, and it’s a struggle to reconcile that (and having to take a handful of pills just to get out of bed) with my reluctance to accept my limitations. I guess it’s all part of a process, though. I’m getting better.

You have just confirmed my thinking, they wanted to cure something they don’t understand. It’s all well and good giving a condition a name, but if you don’t understand the cause, you can’t really treat it. Disease modifying drugs, to me, are a dangerous road, when they don’t know what the disease really is. My PRMS is untreatable, they try to treat my other conditions and I’m sure, some of those treatment upset my PRMS. I had no choice from the day of diagnosis, other than to go with symptom treatment, for my PRMS and the more I know, the more I am glad of that. I still swallow handfuls of tablet, but they treat me, my personal symptoms, not what they don’t understand.

Have either of you been tested for Lyme diseases or Epstein Barr, the virus that causes mono? Both are known to create symptoms that mimic ALS and MS. I wish you well on your healing journeys. It’s so difficult to navigate issues with doctors who don’t fully understand the diseases wrecking havoc on our bodies.

Yes, I have, and also for everything else that can cause any of the many symptoms I have (including lupus, rheumatoid arthritis, and various rare disorders). The only thing that has ever been detected is a vitamin deficiency, which was easily remedied and did not relieve any of symptoms in the least.

Publishing this sort of thing also makes everybody feel like experts, so that when you talk to someone a friend of a friend starts suggesting this or that, or has a friend who once had this pain here and it was cured with this and have you tried it. You can talk until you are blue in the face saying you work with your own team of specialists and discuss the pros and cons of various things yet they still seem to think you could be doing more. I experienced this to the point of someone telling me I enjoyed being in pain and playing the victim otherwise I’d have tried this new fangled thing they are trialling in Germany. Right that thing not available on the NHS, with no sound medical reports and that I couldn’t get to, or be part of if I wanted! The internet is great used in the right way but very dangerous in the hands of some people!

I have to disagree with your comment “research papers really shouldn’t be put in the public domain”. So much other ‘rubbish’ is published in the public domain, rather the general public needs to get a better understanding of how the scientific community works and appreciate that certain specialist studies are not something that everyone will understand or can have an opinion on. Rather, I think that ALL scientific papers need to be published to allow for proper ‘peer review’ by those who understand the subject so that the ‘truth’ about scientific research can be disseminated to the general public. Otherwise, you end up with the situation full of rumours and untruths. As a scientist/engineer, I never rely on information from websites, newspapers, general gossip etc. that I do not understand until it is explained to me by specialists that I know and trust.
As far as CCSVI is concerned, I thought that this ‘theory’ had been debunked many years ago. I admit that I do have a general interest in scientific theory.

I totally agree about peer review, that is how many discoveries are made, but, the public domain is a very different issue. As I said once the research has been completed and all testing done, then tell everyone.

CCSVI was discredited years ago, by two research papers, but another couple appeared once more agreeing with it. That is way the Canadian MS Society paid for further research to close it once and for all as people were paying for unnecessary operations. False hope is a powerful thing and once the rumour of a cure appears, some won’t let go of it, and waste huge sums of money and years of distress and stress, that simply shortens their lives. Which will always be my reason for saying, not in the public domain.

Mmm. What do you mean exactly by “the public domain”? I think the BIG problem here was that the Italian doctor proposing CCSVI (a cardio-vascular surgeon, I believe – surprise, surprise!) made claims about a ‘cure’ for MS, having filed a patent application for a device to test for CCSVI (which is also published in the public domain by the way – sorry patent attorney speaking here), which was picked up by the general media (as usual) & hyped up out of all proportion! I agree with your comment about rumours of a cure leading to wasting of huge sums of money & risking dangerous operations by those desperate people affected.
I myself have MS and right at the start of all the hype, was horrified by the number of my fellows in the MS community who were considering the treatment even though they had no idea what the acronym CCSVI stood for, what the treatment involved and what the risks/benefits were.
I believe that many hundreds/thousands of papers have been published over the years around the world (of varying standard) peaking in the first couple of years but thankfully tailing off now (the Barts MS blog have been occasionally posting the results of meta data analysis on this subject).
I think the Canadian study was initiated because Canadians were seeking treatment in other countries, at least one person died from complications and Canadians were lobbying parliament for treatment to be made available in Canada.
So yes, a very salutary tale – money wasted & risks taken by desperate people & more money wasted by organisations testing the veracity or otherwise of the CCSVI claims rather than on researching other MS treatments.
So what’s the solution? A dictator, isolated state with no freedom of speech? (i.e. no public domain)

No I don’t believe it would affect freedom of speech. I think it is the availability of research material to the media. If we step back in time, this sort of information wasn’t spread around outside those working in that field. Thanks to the internet and the media, who have a lot to answer for, we the patients, only heard these sort of things from our Doctors, when it was at a point it might help us. As they say, the cat is now out of the bag, but, I do feel that the media has a moral obligation, not to spread what is no more than a theory, and then call it a cure, as no one hears the word possible, or future, if it’s used at all, they just hear “cure”. Mind you, other than a few exceptions, the word moral and media, rarely belong together.

It would also get rid of the well intentioned people who tell me almost daily, that my PRMS can be cured! Those who aren’t actually ill, always hear the word cure and nothing else. Unfortunatly, I think it is too late to turn the clock back, but I wrote the post, to hopefully make some think just what the impact of their byline, might really be, and how their reported cure, can actually be a curse.

Yep, I totally agree with you here! As one of your other comments said – the Internet is both a benefit and a curse.
I think everyone with MS (of any form) regularly gets the advice from well-intentioned people about some sort of “cure”. Fortunately, I don’t read any papers and usually manage to ignore such helpful advice. Much like you, I use the Internet extensively and it allows me to do some work and training on-line (which I enjoy). However, there is a lot of nonsense out there and largely, I manage to ignore the bits in which I’m not interested. Look after yourself. Debra